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https://www.tandfonline.com/doi/pdf/10.1080/1369118X.2025.2483834
Sazana Jayadeva & Deborah Lupton (01 Apr 2025): ‘A gift and a curse’: the benefits and limitations of self-tracking Long COVID, Information, Communication & Society, DOI: 10.1080/1369118X.2025.2483834
‘A gift and a curse’: the benefits and limitations of self- tracking Long COVID
Sazana Jayadeva aand Deborah Lupton b
aSchool of Social Sciences (Sociology), University of Surrey, Guildford, UK;
bCentre for Social Research in Health and ARC Centre of Excellence for Automated Decision-Making and Society, UNSW Sydney, Sydney, Australia
ABSTRACT
People living with Long COVID are dealing with significant challenges related to limited understanding of this novel condition, social stigma, and lack of support from medical professionals and others in their lives.
This article discusses findings from a qualitative study about how people with Long COVID have spontaneously engaged in self-tracking for the purposes of understanding and managing their illness.
It draws on 30 semi-structured interviews with study participants in the USA, UK, Australia, Germany, Denmark and Canada.
The study’s findings reveal that the personal health data generated by people with Long COVID through practices of self-tracking create new forms of knowledge about a novel post-viral condition and to some extent challenge the power differentials and fraught sociopolitical climate of the pandemic.
The benefits provided by self-tracking data reflect the often psychologised and understudied position of post-viral conditions such as Long COVID.
All participants described self-tracking as a valuable tool to gain insight into symptoms and evaluate interventions.
It provided them with a sense of empowerment, control, encouragement, and very importantly, validation. However, for some participants, self-tracking their Long COVID symptoms was also sometimes experienced as overwhelming, anxiety-inducing, and frustrating.
The study findings are interpreted with references to the broader contexts of novel chronic illness, medical power, lay expertise, COVID politics and digitised information and care work.
Sazana Jayadeva & Deborah Lupton (01 Apr 2025): ‘A gift and a curse’: the benefits and limitations of self-tracking Long COVID, Information, Communication & Society, DOI: 10.1080/1369118X.2025.2483834
‘A gift and a curse’: the benefits and limitations of self- tracking Long COVID
Sazana Jayadeva aand Deborah Lupton b
aSchool of Social Sciences (Sociology), University of Surrey, Guildford, UK;
bCentre for Social Research in Health and ARC Centre of Excellence for Automated Decision-Making and Society, UNSW Sydney, Sydney, Australia
ABSTRACT
People living with Long COVID are dealing with significant challenges related to limited understanding of this novel condition, social stigma, and lack of support from medical professionals and others in their lives.
This article discusses findings from a qualitative study about how people with Long COVID have spontaneously engaged in self-tracking for the purposes of understanding and managing their illness.
It draws on 30 semi-structured interviews with study participants in the USA, UK, Australia, Germany, Denmark and Canada.
The study’s findings reveal that the personal health data generated by people with Long COVID through practices of self-tracking create new forms of knowledge about a novel post-viral condition and to some extent challenge the power differentials and fraught sociopolitical climate of the pandemic.
The benefits provided by self-tracking data reflect the often psychologised and understudied position of post-viral conditions such as Long COVID.
All participants described self-tracking as a valuable tool to gain insight into symptoms and evaluate interventions.
It provided them with a sense of empowerment, control, encouragement, and very importantly, validation. However, for some participants, self-tracking their Long COVID symptoms was also sometimes experienced as overwhelming, anxiety-inducing, and frustrating.
The study findings are interpreted with references to the broader contexts of novel chronic illness, medical power, lay expertise, COVID politics and digitised information and care work.
